Thursday, January 15, 2009

Life Goes On

We're back home after driving to Rochester, NY, for my great-uncle's funeral. It was a rough trip because my 11-year old son, Craig, got sick with a stomach virus while we were there. Poor kid - it's awful to be that sick when you're away from home.

I'm glad we went, though. It was good to be with my family, and I think it's so important to expose kids to the traditions and rituals surrounding a family death. It's good for them to see that life goes on and to experience the coming together of family to celebrate someone's life. We looked at old family pictures (yes, I finished the slideshow in time!), told stories, shared memories, and even laughed. After visiting hours at the funeral home, my whole extended family (what's left of us) went to a Ukrainian restaurant for dinner. My great-grandparents came to the U.S. from the Ukraine, and my great-uncle Charlie was the last of their kids. It felt right to be celebrating his life with traditional foods.

We don't live near any of our family, so it's extra-important to me to include my kids in family traditions and to show them how to draw comfort from family when you lose someone. Unfortunately, we've had too much death in our family recently. I think my Uncle Charlie was the 9th person we've lost (in my family and in Ken's) in the past 6 years. I hope that these experiences will help my kids when they're faced with the death of someone very close to them. I was devastated for many months when my grandmother died when I was 10.

So, anyway, here we are back home, but my life still feels in limbo. How can it possibly be January 15 already?? Our house is horribly cluttered, and all of my optimistic plans to start the year off clean and organized have been put on hold. We got back Monday night at 11 pm, and Craig's birthday was Tuesday! Since then, I haven't felt well. Besides the obvious stress and extra exertion, I think I may have a touch of the stomach virus Craig had. My over-active immune system has fought off the worst of it, but I've had some stomach cramps and nausea, in addition to the CFS exhaustion and achiness. I'm able to sit up and use the laptop this morning, so I'm hoping I'll come out of this soon.

7 comments:

Happy New Years Sue. I'm glad you were able to go to the funeral. I wanted you to know that my family is from the Urkaine too, having come to the U.S. in the early 1900's.

I've had to stop taking LDN. I was getting sleep disruption even taking it during the day. No prescriptions sleep medications or supplements would help. It was hard to give up the LDN because it was helping the CFS, but without sleep, I was losing all its benefit.

Now I'm trying Chinese Medicine: acupuncture and herbs. It's expensive but we decided to try it for two months and see if it will make a difference. I'm completely housebound and mostly bedbound, so I feel I have to keep looking for ways to improve my quality of life.

I know this is about 4 years after the fact, but I ran across your comment about LDN, and thought my experience might be relevant.

Initially, LDN severely disturbed my sleep, even with sleep medications/supplements. Even when I cut the dose in half, then in a quarter, I still had the sleep disturbances. Then finally, my doctor suggesting diluting the medication in water. I put the contents of the 3 mg capsule in about 1/2 cup of water. The first night I took 1 teaspoon of the solution. Then over a period of weeks, I gradually increased the number of teaspoons I took. Eventually I worked my way up to 3 mg, and then to 4.5 mg a night. I don't know if this experiment would be helpful for you (or if you even want to try at this point) but it might be worth a try.

I was also curious how your Chinese Medicine experiment ended up working out. I've emailed a number of TCM doctors in the local Boston area, and several of them report positive results with CFS patients, but from what I've read online, the experience of the CFS community is quite mixed. What was your verdict?

I'm so sorry to hear you had to give up on LDN. It's definitely helped me a lot, and I've been fortunate not to experience any sleep problems at all on it. You're absolutely right - don't give up! Keep trying and looking for ways to improve your health. Something along the way is bound to help. Have you been tested for underlying infections? often, people with CFS who are severely ill end up having high levels of viruses or maybe even Lyme disease.

And how exciting that your family is from the Ukraine, too! My great-grandparents came to the U.S. sometime around 1910. They came from the same area, near Kiev, but didn't meet until they had both settled in Rochester, NY! My family still eats all the traditional foods for Easter.

Good luck with the acupuncture and Chinese herbs. I hope they help you.

I love your perspective on family. You are definitely blessing your boys by embracing those traditions. I'm sorry to hear you're not feeling well, and I hope you bounce back soon. Thank you for sharing your experiences!

I have had Chronic Fatigue Syndrome (CFS or CFIDS) since March 2002. My 19-year old and 16-year old sons also have CFS, and my older son also has Lyme disease plus two other tick infections. This blog is about how our family is learning to live with chronic illness, with a focus on living and enjoying our lives in spite of these challenges.